Inside Health

PATIENT POWER

PATIENT POWER; The Big Decisions? They're All Yours

By Sheryl Gay Stolberg

Published: June 25, 2000

SUSAN HOROWITZ faced the classic patient's dilemma. Three different doctors had given her three different recommendations about whether to undergo chemotherapy for her breast cancer. ''I found the idea of chemo really frightening,'' she recalled. Chemotherapy, she knew, would throw her into menopause - and she was only 45 years old.

It took six weeks for her to decide to do it. ''It was agonizing,'' Ms. Horowitz, now 49 and living in Los Angeles, said, referring to the decision. But she was determined not to turn it over to a doctor. ''It was a huge challenge, an intellectual challenge, to get all the information and to do the research,'' she said. ''And I actually took up that challenge.''

Women today are increasingly familiar with the challenge, and the agony, of medical decision making. Over the past two decades, a revolution in patients' rights and an explosion of information in books, newspapers, magazines and cyberspace have enabled women, and men, to educate themselves as never before, Doctors' attitudes have changed, too; once derided for their paternalism, many now expect patients to research their own diseases and make decisions on their own.

That is both a blessing and a burden for women, who have traditionally bee the gatekeepers of family health. Women make choices not only for themselves, studies show, but also for their husbands, children and parents. According to the Society for Women's Health Research, a nonprofit group in Washington, women, who account for 52 percent of the population, make three-quarters of the health-care decisions in the United States and spend nearly two out of three health-care dollars. About 59 percent of doctors' visits are made by women, the society says, and 59 percent of prescription drugs are purchased by women.

Women also face some of medicine's thorniest questions. The plethora of alternative therapies is complicating the medical landscape for women, as well as men. And these changes are occurring within the framework of reduced reimbursements for doctors under managed care, which means that medical professionals are busier than ever, and have less time to talk through complex problems with their patients. The result, experts say, is a case of information overload among patients, particularly women, in the information age.

''It is an overwhelming task for women, and consumers in general, to be able to sort through the information they find and make decisions,'' said Amy Alliana, the program director of the National Women's Health Network. ''Patients are in the position of having to do a lot of work on their own.''

Not every patient is as eager as Ms. Horowit to be fully in charge. Katherine Russell Rich, whose book, ''The Red Devil: To Hell with Cancer and Back,'' recounts her experience with breast cancer, remembers the terror she felt when her oncologist explained the treatment options: ''He was trying to draw pictures of the breast. All I remember is it looked like he was drawing targets. Finally, I said, 'But what should I do?' And I remember this horrifying moment when he said, 'I can't tell you.' ''

Until fairly recently, those words - ''I can't tell you,'' - rarely crossed a doctor's lips. ''Patients always used to say, 'Well, what would you do if it were your brother, or what would you do if it were you?' '' said George J. Annas, the chairman of the health law department at the Boston University School of Public Health. ''Many doctors are comfortable now saying, 'It's not me, it's you, and you're the one who has to decide.' ''

To dr. Annas, that is a welcome change. ''I think people have some responsibility for their own decisions,'' he said. ''Patients should accept this as part of the price of the wonders of modern medicine.''

Others see patient autonomy running amok. Carl F. Schneider, a professor of law and internal medicine at the University of Michigan who has recently written a book on medical decision-making, said that doctors have become so enamored of a patient's right to choose that they are abdicating their responsibilities as healers. He has a term for what happened to Ms Rich - ''mandatory autonomy,'' a practice that he said stems in part from fear of lawsuits. Doctors, after all, can be sued over whatever decision they make. But is the patient makes the decision, who is to blame?

Yet Professor Schneider says that as patients get older, and sicker, they are less likely to want to make their own medical decisions. The same patient may want more, or less, autonomy at any given time. And he turned up this surprising tidbit: Sometimes the best-educated patients are the least likely to want to make their own medical decisions. These patients, he said, often tell him: ''Look, I'm an expert in my field; I know how difficult it is to talk about technical problems to laypeople, and how much expert thinking is passive thinking, not fully articulated. So what I try to do is pick the very best doctor I can, and then do what he or she says.''

The current era of patient empowerment has its roots in the debate over whether dying people had the right to refuse life-prolonging therapies. The 1976 court case of Karen Quilan, the New Jersey woman who parents fought to withdraw her life support, established broad public support for this right, and with it the notion that sick people, not doctors, should be in charge of their medical decisions.